What is the name for this?

[Loobs39]

I am suffering quite badly from that condition where you experience what feels like bubbles or tiny insects crawling up and down the backs of your legs?? I am due to visit the doctor tomorrow and will discuss this but cannot remember the name of this condition - can anyone remind me??

[Loobs39]

Wonderful, thank you - I knew it was something to do with the French word for ants (Formis) - I won't forget it now.

[SlowDragon Administrator]

Previous post you were getting Thyroid and vitamin testing

Can you add results for vitamin D, folate,B12 and ferritin

Low B12 may be causing this

What vitamin supplements do you currently take?

[Loobs39 in reply to SlowDragon]

To be honest I have got to the point where I feel other things are taking over my thyroid issues. Like many on here I suffer from a plethora of autoimmune issues; Hashimotos, Perniscous Aneamia, Lichen Sclerosis and RA. Currently the RA is making it difficult to walk, my knees are so bad that even pain killers don't help (hence the doctor visit tomorrow) and because I am walking as though on a ship (I kid you not) my hips are also beginning to hurt. My doctor told me a few months ago that I "probably don't actually need B12 injections as most people who have them don't really need them" so I haven't had a jab for 4 months - normally every 3 months - but I have arranged one for tmrw as not sure if that could be part of the problem. I take vit d, plus 75 mg of Levo - I used to take loads of supplements but have got pretty apathetic about things generally at the moment.

[SlowDragon Administrator in reply to Loobs39]

75mcg Levothyroxine is only one dose up from starter dose. You may be under medicated

Feeling like "Walking on a ship" is classic symptom of B12 deficiency

Suggest you ask advice on Pas healthunlocked about getting regular injections reinstated. If you have PA injections are required for life

Highly likely to have low folate, ferritin and vitamin D too

Strongly suggest you get all these tested plus full Thyroid - TSH FT3 and FT4

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Ask GP to test thyroid and vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. This may also help maintain B12 levels between injections. Many people need B12 injections more frequently than 3 month gap

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low vitamin D and low B vitamins may be linked as explained here

healthunlocked.com/thyroidu...

Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Sore hips may we'll be low vitamin D

As you have Hashimoto's, and RA Are you on strictly gluten free diet ? This helps thousands.

Autoimmune diseases often linked to Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.

Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[Loobs39 in reply to SlowDragon]

Thank you so much for all the information, I haven't been thinking too much about it being a B12 issue, assumed it was RA so hopefully tomorrow will help me improve.

Last blood test results were 10th June 2019.

Plasma TSH 0.29 (0.3 - 5.6)

Ferritin 56 (11 - 307)

Folate 14 (4 - 20)

B12 683 (145 - 914) - this was about 5 weeks after last B12 jab!

FT4 13.8 (6.3 - 14)

I have found that if I increase my Thyroxine I tend to get palpitations so always go back down? I really need to get a grip and sort out private blood tests in case I have a conversion problem. Thanks again - I'll let you know how I feel after I have my B12.

[Loobs39 in reply to SlowDragon]

I meant to say, I have been Gluten free for nearly 4 years now.

[SlowDragon Administrator in reply to Loobs39]

No vitamin D test?

vitamindtest.org.uk

Suggest you get vitamin D tested

Then, assuming that's ok....get TSH, FT3 and FT4 tested about 3-4 weeks after B12 injection

[Loobs39 in reply to SlowDragon]

No, no Vit D test. I supplement throughout the winter but spend a lot of time in the sun in the summer so don't use it then - maybe I should.

[SlowDragon Administrator in reply to Loobs39]

Vast majority of autoimmune patients have terrible vitamin D .....unless supplementing all year and often at quite high dose

Suggest you get tested

Aiming to maintain vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

[Loobs39 in reply to SlowDragon]

Well, had my B12 jab and there was a definite improvement in the formication - virtually gone. I also have more energy and I am less breathless so I will definitely ensure I have it every 3 months plus I think I will supplement with Methylcobalamine (sub lingual). However, my knees are still very painful and therefore I still walk like I am on a ship. I am having xrays tmrw and hopefully the problem can be sorted by having my knees 'cleaned out'. It is a vicious circle, I cannot exercise because my knees are so painful (even with pain killers) so I am putting on weight plus the painkillers make me feel sick when hungry so I'm eating more so I'm putting on weight etc. etc. Fingers crossed it can be sorted out.

[humanbean]

Regarding the feeling of bubbles that you get under the skin, as well as taking Vitamin B12 I would suggest magnesium as well, if you don't already supplement it. Look up "Best and worst forms of magnesium supplement" and choose one that fits your circumstances. You would probably need around 250mg - 350mg magnesium per day. Some people find magnesium makes them sleepy so take it in the evening.

You also mention having sore knees. My husband has serious problems with his knees. Improving his vitamin D helped him a lot.

[humanbean]

Ferritin 56 (11 - 307)

Your ferritin is only 15% of the way through the range.

Many people have found that increasing iron levels up to mid-range or a little bit over helps them to feel better. This would imply, with the reference range you've given, that an optimal level of iron would be around 160 - 180 (ish).

There is one major problem though - treating yourself with iron just on the basis of a ferritin level is not a good idea. If your serum iron had been measured at the same time as your ferritin, you might have had :

1) Low ferritin with low serum iron.

2) Low ferritin with "normal" serum iron.

3) Low ferritin with high serum iron.

Other test results are relevant in deciding if people should supplement iron too, e.g. transferrin saturation percentage. If blood is highly saturated with iron already then supplementing isn't a good idea.

Situations 1 and 3 above have different causes, and should be treated differently to avoid possibly poisoning yourself with inappropriate and unnecessary iron supplements.

The safest way to improve iron levels is probably to eat 200g of liver once a week. It contains excellent levels of iron, but also contains lots of other nutrients too. If you don't eat meat, then this website is worth browsing :

dailyiron.net/

[Loobs39 in reply to humanbean]

Hi - thank you for taking the trouble to reply. I will look at taking magnesium and need to further investigate the ferritin - my folate is fine so, as you say, it is tricky trying to work out how to take which forms of iron. Had knees x-ray this morning so fingers crossed it is something than can be sorted - I cannot imagine being like this for ever.